Holly at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby peekaboo » Mon Jun 08, 2009 2:02 pm

WEEK 1

Not much to post...had little pain - gone now unless i do a sit up and use mmy neck...no chest sensations other than ms hug. the weather has been kind low to mid 70's...can't test heat tolerance...fatique I am wheelchair dependent and all i can sayis that when i transfer i have a bit more spring in my arms :)

found some cool graphics re thorax area next post..
Last edited by peekaboo on Tue Jun 09, 2009 6:59 am, edited 1 time in total.
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Postby peekaboo » Mon Jun 08, 2009 2:41 pm

Just had a lhermittes but not down my spine but down my right arm...fisrt ever for arm...[/quote]
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Postby mrhodes40 » Tue Jun 09, 2009 5:38 am

One week Holly, how are you? Are you going to do a regimens post or keep up here?
,marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Postby peekaboo » Tue Jun 09, 2009 7:02 am

I just edited my post to read week 1...since there is not much to report maybe until some healing occurs I may comment here instead of a new thread. What do you think?
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thorax and cerebral graphics

Postby peekaboo » Tue Jun 09, 2009 7:51 am

position of thoracic strucuture according to vertibral levels
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Postby peekaboo » Tue Jun 09, 2009 1:29 pm

just got vein pressures before and after...this is what he wrote

Your specific measurements recorded while in the cath lab were: Left jugular (pre)—12/5/mean of 8 mmHg gradient 3mmHg; Left jugular (after) 6/4/mean of 5 mmHg gradient of 0. Right jugular-- 10/6/mean 8 mmHg. gradient of 1mmHg. Azygous (pre)—11/8/mean 9mmHg. Gradient of 5-6mmHg; Azygous (post)—9/2/mean 6 mmHg gradient 0-1mmHg.

These pressures are rough guides and should not lend themselves to subtle pseudo-intellectualizations regarding precise comparisons….rather, they are general indicators and the relative gradients are more important to me than the absolute numbers.


What does gradient mean and what is its value? marie?
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Postby peekaboo » Wed Jun 10, 2009 6:46 am

I am going to see my pcp today....i anxious to see how he accepts/acknowldges the CCSVI theory and my test results..
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Postby Sharon » Wed Jun 10, 2009 7:01 am

Holly, I hope you have the reaction I did from my GP. She was so excited to hear about the procedure - she was impressed with her phone conversation with Dr. Dake. My blood test came back and the GP is changing the Coumadin dosage a bit. Are you getting a bunch of bruises? Geez, they just pop up everywhere and I really am trying to be careful.
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Postby mrhodes40 » Wed Jun 10, 2009 8:49 am

Scuse me, just want to jump in, bruises gosh me too!!

I am up to 7mg coumadin. cut my thumb a tiny bit saturday and the scab kept coming off and it kept bleeding off and on till monday. I am keeping a bandaid on that until it looks gone!
Mom picked me up and said 'Don't bleed in my new car' I get no sympathy round here :lol: :lol:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Wed Jun 10, 2009 11:49 am

bruises all over my arms right & left :cry:

got back from the doc pcp he was so cool about it and gave me the respect to listen to the theories of CCSVI and even laughed when i made the joke...

instead of saying I'm sparticus...no i'm sparticus i said... i'm asygos...no i'm azygos :roll:
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Postby Sharon » Wed Jun 10, 2009 11:51 am

I am at 5mg M,W,F,S,S - 7.5 mg on T.Th
This is all a new experience for me - fortunately, I have not had to take medications before. I am now using a weekly pill box so that I do not forget to take something.
Sharon
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Postby mrhodes40 » Wed Jun 10, 2009 1:08 pm

I'm still cjhecking coumadin level 2 x week and adjusting accordingly we are doing a full coag panel this thurs.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Wed Jun 10, 2009 2:23 pm

I'm still cjhecking coumadin level 2 x week and adjusting accordingly we are doing a full coag panel this thurs.


Yes, and there you go -----one more bruise!! Hope the doc or nurse is good at drawing the blood so they don't have to try twice.

I go back in two weeks for a recheck of my blood work
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Postby peekaboo » Fri Jun 12, 2009 10:50 am

My blood test came back as 1.5...I will have to one an 1/2 pills (7.5) on weds & fri..very similar to Sharon's
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Postby cheerleader » Fri Jun 12, 2009 11:10 am

peekaboo wrote:My blood test came back as 1.5...I will have to one an 1/2 pills (7.5) on weds & fri..very similar to Sharon's


This is interesting....Jeff is on 7mg. coumadin everyday. At 5, his blood was too thick. One of my suppositions from the beginning of this adventure is that MS patients have hypercoagulation issues. That's why I started Jeff on all the proteolytic enzymes (they eat fibrin and protein in the blood) and vasodilation supplements.

It seems that our first four Stanford patients need more coumadin than the "average" patient, who only needs 5mg. to get the blood thin enough for stent patency.

We need to get hematologists involved in this research. I'll talk to Dr. Dake about it when we go back in July. I'll bet he could get the hematology dept. at Stanford interested. I know Marie has written alot about her coagulation issues, and why she believes they are part of MS. Could the venous issues alone be responsible for hypercoagulation, Marie? There must be more to this, right? Doctors have not been looking at the blood....but I think there's another piece of the puzzle there. Maybe start a new thread...so we don't hijack dear Holly again!!!
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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